Brain and spine charity rocked by “heartless” vandalism of its two shops

By Rachel Steinberg

A charity that helps victims of conditions which damage the brain and spine has been left devastated after hooligans vandalised two of its shops and broke into its van to steal the sat nav.

Alex TLC chief executive Sara Hunt said the incidents, which began during the first lockdown, have badly hit the project, already seriously struggling to cope with increased demands on its services due to Covid-19.

Many of Alex’s TLC’s beneficiaries are classed as extremely vulnerable – they have genetic disorders that affect the central nervous system and can cause impaired mobility, vision, speech and hearing, incontinence, inability to swallow and loss of cognitive skills.

Ms Hunt said vandals targeted Alex’s shops in Forest Hill and Peckham, spraying the gates with graffiti. The bin locks for the latter location are routinely cut through and its contents ransacked, with discarded items littered onto the road.

The charity is worried about being fined for flytipping, so they continue to invest in new locks—a frustratingly endless cycle, said Ms Hunt. Thieves also broke the window to the charity’s van in order to pilfer the pricey sat nav, the second such incident in two years.

She asked: “Why pick on charities in this climate? Heartless.

“We’re doing all we possibly can to be self-sufficient and innovative to keep going [during the pandemic], so to have all the efforts of our extraordinarily loyal team of staff and volunteers…kicked in the teeth by mindless hooliganism is heartbreaking.”

Ms Hunt said the ramifications of the pandemic on the charity, which runs five shops across South London, were catastrophic. Alex was doing well before lockdown began in March, exceeding all income targets.

But the pandemic has seen retail income, upon which Alex heavily relies, decrease by 30 per cent on last year, and Ms Hunt expects that figure to grow. Donations also dropped considerably from last year’s figures.

But spport calls to Alex have rocketed by a quarter. Ms Hunt emphasised that while they have been able to access some emergency grants, the increased demand has stretched her staff to their limit, and she did not believe the government was providing enough support to the charity sector.

“These mindless petty incidents take our time away from supporting beneficiaries and doing vital work with the NHS,” she said.

Ms Hunt said the charity is doing its best to adapt to the difficulties generated by the pandemic, and she is determined to continue serving those in need and keeping Alex’s staff who are all local to South London, in their jobs.

She’s hoping a new web store will help the charity recoup some of its lost retail income, and they have successfully applied for a business grant to test the outlet’s viability for six months.

Customers can buy goods through the online shop, which is operating a Covid-friendly click-and-collect service from Alex’s Peckham location, or have them shipped. The new project is looking for volunteers.

Those who wish to help can also donate money to the charity’s JustGiving page or goods to its five shops.

Alex TLC holds just 566 diagnoses of the condition, called, leukodystrophies in its database, but research shows the incidence rates are much higher.  That is why early detection is vital, and Alex TLC is pushing for the most common type, adrenoleukodystrophy (ALD), to be included in the UK’s newborn screening programme.

The disease, which affects about one in every 20,000 males, can start to become evident between the ages of four and the early teens, with symptoms including hyperactivity, disruptive behaviour, and memory problems.

Effects of ALD then worsen to include vision loss and epilepsy. Many cases progress to a complete state of unresponsiveness within years, or sometimes mere months. Much is known about the disease, but there is no treatment to reverse the progression.

Alex TLC is in the middle of a key consultation, ending on January 5, 2021, which Ms Hunt hopes will be successful in getting ALD added to the newborn screening programme. She said the organisation filed a similar application in 2017 but was turned down.

The shop damage has drained valuable resources from a landmark campaign for the charity and its beneficiaries.

She said: “We’re advocating for people affected by these cruel conditions and really can’t afford not to come out of this situation in one piece. We’d be letting so many people down.”

You can donate to the Big Give fundraising campaign which is dedicated to newborn screening at https://donate.thebiggive.org.uk/campaign/a051r00001fHRKcAAO

Pictured: Sarah Hunt next to vandalised vans